A group of families using our wonderful homeschooling program that makes it possible for this chronically ill mom to still bless my children with a quality, Biblically-grounded education even when we are "bed-schooling" many days.

Tuesday, August 31, 2010

We started school a week ago with a 6th grader, 2nd grader, and 4 1/2 year old dipping his toes into K (we usually do K and 1st over a 3-year span). We are sticking with our tried and beloved My Father's World program that we've used since the 6th grader started K, along with Math U See. In January we will also be adding Rosetta Stone Spanish to the mix. The kids and I have set a goal to memorize the entire book of James this year. Emotionally I'm very excited about the new year! Physically, I'm really dragging and would appreciate your prayers for strength and grace.

It's going to be a busy year for our kids. Our older two are entering First Lego League robotics competitions for the first time (hubby will be managing most of their involvement in this program), we'll have homeschol co-op (2 hours on Thursday afternoons, my one planned weekly outing outside of church, usually accomplished in a wheel chair), AWANAs (the kids are going with a friend to their church on Wednesday nights, so no transportation required of me this year), and our church is launching Pioneer Clubs (every other Tuesday night). It is so hard to find the balance between being a hands-on mom who doesn't want to miss these quickly passing moments of my kids growing up years, and doing what I need to do for myself and my health. I'm so thankful for friends who help along the way. I've only got one chance at this mothering thing and I so yearn to do it well, but it's so hard when I'm always so sick.

Outside of kid activities, I'm helping our pastor's wife organize a pregnancy/ infant loss remembrance event sometime around Oct. 15. I'm also still traveling back and forth to Stanford for medical treatment and am hopeful I may be pulled into local clinical trials sometime later this fall or winter. And painfully slowly, I'm continuing to make baby steps of progress on my book on the life of Paul and living with chronic pain/illness.

Lord, please give us your strength to keep in all in balance, to your glory, this year! I'm so weak and weary...

Wednesday, August 25, 2010

Long-awaited news hit the airwaves this week with the publication of a positive replication study confirms WPI's findings linking CFS to a new retrovirus!!! Actually, to be clear, it wasn't specifically XMRV that was found in the FDA's study, but a whole family of closely related viruses known as murine leukemia virus (MLV)-related viruses or MRVs (for MLV-Related Viruses). This could be one more reason why four other studies after the October Science publication failed to find XMRV. To understand the implications of all this, here's Dr. Judy Mikovitz, the head of WPI's research department:

Additional clarification can be found at X Marks the Spot? from today's Wall Street Journal, stating in part, "Researchers led by NIH infectious diseases specialist Harvey Alter found a family of retroviruses called MLV-related viruses in a majority of CFS patients. X[MRV] is a member of that family. But the Alter team found that the strains of virus in the patients that they tested were closer to another branch of the same family — viruses known as polytropic MLVs (you got it — shortened to “P”) — than to X."

The above article later states that CFS may turn out to be "a constellation of diseases, only a proportion of which will be shown to be associated with XMRV/MLV." Another possibility is that "CFS could end up looking more like hepatitis...in that patients have similar symptoms that are caused by five distinct viruses." AS WPI has continued studying their samples since the October Science publication they have found "almost all of them are positive for one or more MLV-related viruses, including X and P."

Saturday, August 21, 2010

Congratulations to the Whittemore Peterson Institute in Reno, Nevada for their grand opening today! I was in tears (and not so quietly, I might add!) before the welcoming announcements were half over. The beautiful building feels spa-like but the research happening at this first-of-its-kind facility is life-changing. I can't wait for the actual clinical phase to open and for patients like me to start seeing doctors. To share a clear idea of what this all means to me personally, please take a moment to read my XMRV poem.

What a joy to see Andrea, Dr. Judy, meet Facebook friend Lisa, and just be blown away by the sheer size and scope of all this building and all the plans for its use. My dear friend, Veronica, was such a blessing and delight to share this experience with. She drove me and pushed my wheelchair (except for the short "hijacking" by a friendly older gentleman who must have thought I was all on my own and "helped" me out of the elevator and half way down the hall before she could catch back up with us - LOL). It was a beautiful, emotional, exhausting, hope-filled morning. I've been in bed (now with hives) all afternoon as a result, but the energy expense was well worth the emotional boost of hope.

P.S. I'm still raising money to attend the WPI's fundraiser gala next month, in support of ongoing research. Will you help me "dance"? Details at http://infertilitymom.blogspot.com/2010/07/can-you-help.html

Thursday, August 19, 2010

Wow, things are moving fast now. Hard to even know where to start!!! (If you don't know what I'm talking about when I mention XMRV, you will want to start here so you understand the rest of this post.)

First of all, you may remember my discouragement just a short time ago and the apparent government cover up of XMRV research confirmation. Well, guess what? It's out in the open now! Yes, front page headlines this week have read, "Finding by Reno Scientists Confirmed by US Government"! XMRV has been found via replication study and it's finally made mainline news. Help and hope for real treatment are a significant step closer to reality now. I'm giddy with excitement!

I plan to attend the grand opening of the actual building that now houses Whittemore Peterson Institute for Neuro-Immune Disease (WPI) on Saturday. I'll be there by wheelchair, but I'll do everything in my power to at least be there! I am still very hopeful about also attending their fundraising gala next month, but I still need to raise over $300 by the end of the month to make this goal. (Thank you to the handful of friends who have helped me raise a portion of the needed $500 total so far! If you are able to help me with even a couple of dollars, I would greatly appreciate it.) If I do not raise enough to purchase the two tickets, I will still be donating every penny I do raise directly to WPI for ongoing XMRV research.

Speaking of XMRV, that name may not be the one we continue speaking for the long term. I don't have any additional information nor confirmation at this time, but according to a post made this morning on the Phoenix Rising forums, HGRV- Human Gamma Retro Virus (thus illness caused by this infection is HGRAD- Human Gamma Retrovirus Associated Disease) will be the new name announced next month. This name more accurately reflects the medical and scientific realities of the cause and course of this virus (and might I note, it roll off the tongue a whole lot easier than Xenotropic Murine Leukemia Virus-Related Virus Associated Neuro-immune Disease)! It will be interesting to see what comes of this potential change and I'll do my best to keep you informed as any updates are available.

The text of the posted letter, attributed to Dr. Joseph J. Burrascano Jr. of New York reads:

Hello all from Dr. B.
I just returned from the first official scientific symposium of the Whittemore-Peterson Institute on the topic of XMRV.
We formed a working group to be in constant touch and we plan to meet regularly because advances are coming so rapidly.
Big news that everyone should know and adopt is that we have proposed a name change for the virus.
This virus is a human, not mouse virus, and it is the first and so far only gamma-retrovirus known to infect people. Also, it is clearly not an "endogenous" retrovirus (one that is present in all genomes due to ancient infection).
Because of all of this, and because of the desire to begin on the right track, the new name of the virus is HGRV- Human Gamma Retro Virus. The illness caused by this infection is named HGRAD- Human Gamma Retrovirus Associated Disease.
We plan to announce this at the upcoming NIH retroviral conference this September.
Definitely stay tuned- the volume of new and important information about this virus and its disease associations is increasing rapidly and in my opinion should be a concern to every patient with chronic neuro-immune diseases, including those with chronic Lyme.

Joseph J. Burrascano Jr. M.D.
Water Mill, NY, USA

Update on potential name change as of Aug. 20, 2010, as posted to Andrea Whittemore's Facebook wall:

Speculation and rumour about a name change is just that Speculation and Rumour . Discussions about name changes are up to the Government !!!!

Realized I hadn't taken the time to update on a handful of health issues I've mentioned here in past week. Most excitingly, the biopsy came back clear on the section the cut out of my scalp a couple weeks back. Praising the Lord for NO CANCER!

My abdominal pain has significantly improved and currently only seems to give me issues if I'm "stressed" (for my body all that might take is simply being around a group of people that I enjoy being with because stress can just mean anything beyond my limited physical tolerance thresholds) but overall seems significantly self-resolved. About the time of my HIDA scan I also ran out of a cranberry supplement I've been taking for the last couple of years for urinary tract issues - I never started them again because the resolution in pain seemed closely tied to the timing of stopping these pills, so I'm highly suspecting there may have been a link in my body not being able to process them well? For whatever the reason, again I'm thankful to God for His hand in allowing me to avoid surgery or further immediate testing.

For a little over a week I've had a fairly constant "pill stuck in my throat" sensation. Not typical CFS sore throat, not anything choking me enough to cut off air, but it just feels like a pill didn't swallow and is sitting there. It's worse after I actually take pills (not so much when I'm swallowing to eat) and is getting more persistent by the day. So far the potential explanations offered to me have been swollen lymph nodes, viral activation causing a temporary ulcer in my throat, "cricopharyngeal dysfunction" where a muscle (annoyingly, but harmlessly) constricts in the throat when it shouldn't, or heartburn. All of these ideas have been presented by others who have experienced similar sensations and these were the various answers given them by their doctors. If it continues to worsen, I'll go talk to my own doctor and see what she has to add. Since none of the possibilities sound too serious and I can live with the issue at its current level of annoyance, I'll just wait it out for a while, but it sure does feel odd.

Oh, and I almost forgot. I dropped a PAPERBACK book on my baby toe yesterday and broke it...

Tuesday, August 17, 2010

Just a few weeks ago I admitted my perfectionistic tendencies. Since then I have been slowly, imperfectly (as in not every day, not consistently, not to my exacting expectations of what good Christian "quiet time" or "devotional" time should look like - gasp) working my way through Biblical references to the word "perfect". There have been days where I am humbled and challenged by the process, and times when this study has been quite liberating.

Amazingly I've been excited and surprised to see how closely this study falls hand-in-hand with all I'm learning as I work on writing my book on Paul about living with chronic pain/illness. Today, as I was tweaking some things in my book introduction I was stunned to realize that a key verse I had chosen months ago for the opening section of the book is one that falls right into my study on perfectionism:

“Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me.”
- Philippians 3:12 (NIV)

I love it when God so beautifully orchestrates and intertwines so many different aspects of my life, all to teach me more about Himself and His loving, personal grace toward me. In celebration and recognition of God's ongoing work in my heart, I'm adding the word perfect to my growing list of life theme words today.

Monday, August 16, 2010

I frequently reference the retrovirus XMRV here. (See update on possible upcoming name change from XMRV to HGRV.) Some may wonder (as I did less than a year ago!), "What exactly is a retrovirus? How does it differ from your standard old virus?" In short, a retrovirus is a "super" virus that actually writes itself directly into a person's DNA, for life. The only other two known infectious human retroviruses are HTLV (linked to a form of leukemia) and HIV (linked to AIDS). I have also written a poem describing my life with XMRV.

Not written by me, but I found some very helpful and detailed information outlining XMRV and explaining things like the way XMRV is to XAND as HIV is to AIDS. Here's also a great audio interview explaining in simple language about Chronic Fatigue Syndrome (CFS) and XMRV by Hillary Johnson, author of Osler's Web, recently recorded with "A Conversation of Hope".

Had back-to-back mono then chicken pox when I was 8, followed by abdominal pain, eventually diagnosed as Endometriosis. Fibromyalgia began around age 15/16. Hard CFS crash at 18 (20 years ago in Sept), mostly bed- /home-bound for the next 4 years. Had some "moderately" sick years and battle through infertility /miscarriage. CFS relapsed significantly 3 years ago when our youngest was 1. Positive for retrovirus XMRV

In reply to a friend who commented on the 4 year journey to her Endometriosis diagnosis and her thankfulness that I have so much support...

Yes, I have been VERY blessed with supportive family who love me and advocate for me. Most do not have this.

I wasn't diagnosed with Endo until I was 16 (then it was only "probable" because I did not have a laparscopy to confirm until I was about 25), but pain started at 8 and grew increasingly worse from puberty onward. I started BCPs at age 16 to manage pain, crazy cycles and excessive bleeding.

Interestingly enough, a hysterectomy at age 36, while helping with much of the Endometriosis pain, did not resolve all abdominal pain issues. I have since learned that abdominal pain, especially on the right side, is common with Fibromyalgia (irritation to the psoas muscle) and to CFS (gal bladder, liver and other digestive issues). While three different surgeries verified Endo, some of the pain I had always attributed to the condition were probably related to other underlying health issues instead.

My CFS diagnosis took just 7 months - amazingly fast since CDC requires a minimum of 6 months of illness and ruling out of all other potential causes before it can be labeled. But I was SO SICK and when all other tests came back clear, that's the label that was left. Since the CFS onset (accompanied by another round of mono), I've had chicken pox about 6 more times, so I really believe my current health issues probably stem back to what my body dealt with when I was 8, when I personally speculate XMRV likely came on board.

Fibromyalgia wasn't diagnosed until my early/mid 20s, though I had been symptomatic for about 10 years already by that point.

To a friend commenting on just how young I was when health issues arose, wondering about the ages of our living children, and asking about XMRV I replied:

Our sweet miracles are 10, 7, 4. We started TTC (trying to conceive) shortly after my 20th birthday. I will be 38 this summer.

XMRV (click here to see all my previous posts on the topic) is the 3rd infectious retrovirus discovered in the human population. A retrovirus differs from a regular virus in that it actually writes itself directly into my genetic code, becoming part of my own DNA. HIV is the most well-known retrovirus, so that gives you an idea of how serious this could be and why I've been so very sick for so long. More information about XMRV and XMRV- Associated NeuroImmune Disease (XAND) can be found at http://www.xandxmrv.com/.

Last October a local, privately funded research institute, The Whittemore Peterson Instiitue (WPI) published the first Scientific paper linking XMRV to CFS, a retrovirus that has also been linked to a specific form of prostate cancer. The scary part is that nearly 4% of the healthy control patients used in the study also tested positive for XMRV meaning many "healthy" people in the general population could be carrying and spreading another AIDS-like virus and not even know it yet! Several counties are now banning blood donations from CFS patients as XMRV continues to be studied.

Unfortunately, this discovery is being largely ignored among those who could make a difference in funding for further research.

Thank you for entering into my world with me for a moment and learning more about CFS. If you have any questions for me please post them! I will do my best to share information and experiences from my perspective. I posted additional/updated information on July, 2010 at More on XMRV including an outside link to a very-well ordered Timeline of XMRV.

I know it's not great for me. I know I would feel at least some better, overall, if I didn't eat it. But it brings pleasure in the moment so it's really hard to convince myself that I will "feel better" if I don't indulge in that palm full of chocolate chips and a peanut butter dipped spoon when I need an energy pick-me-up!

This past weekend I read through a book on how the body's healing processes work and what causes them not to work. There were some issues I definitely agree with, others I really question the author's conclusions, and a few I will have to research more and prayerfully draw my own conclusions. But one point I couldn't really argue with in his logic was his explanation of how refined sugar is such a huge culprit in the breakdown of the immune system.

Believe me, I wanted to disbelieve those points, but something I already "knew" was finally presented in such a way as to make me really sit up and take notice. For years I've been told that "sugar is bad for the immune system" but now I finally better understand the whys and how of what sugar does to my body. sigh

I've often said if someone could come into my home and do my meal planning and cooking for me, I would really give gluten free and other such dietary limitations a go. Guess I need to add sugar-free to that list of foods I wish a personal chef could come rid from our family life! It's so frustrating to feel so sick that I barely function to get any kinds of meals together for my family, so I default to the "easy" (i.e. often least healthy) options. But if our food is adding to our feelings of ill health, that puts me in a vicious cycle of not being well enough to take the steps to encourage better eating that leads to more energy to do things better.

So after reading all this and taking the time to "digest" some of this news, I woke up praying this morning about what kinds of changes I can make. My personality is the kind where I could easily go on a rampage, rid the entire house of all sugar for a few weeks (or maybe even last a few months), put my family through withdrawls, then make one tiny slip and give the whole thing up, falling right back into our current lifestyle. Since those aren't the end results I'm looking for, I know I'll have to start small, but I want to start somewhere. With these thoughts and prayers spinning around in my head, here's the verse of the day sitting in my inbox when I open my email:

Since we have these promises, dear friends, let us purify ourselves from everything that contaminates body and spirit, perfecting holiness out of reverence for God.
- 2 Corinthians 7:1

Somehow it's easier to trust God to help me purify my spirit than my body I think. Lord, I guess you can't be more clear than that! Out of reverence to You, please show me, one step at a time, how to better treat my body, Your Temple, with the day to day food choices I make for myself and for my family.

I am not disillusioned into thinking that all I have to do is change some dietary habits and I'll be fully well as a result. (The book I was reading would have me believe so!) A retrovirus is serious stuff and I know many a friend with much better dietary habits who are still just as sick as I am, or even sicker. But I do believe every step I can make toward giving my body the best environment toward healing is a step in the right direction. Healing is ultimately in the hands of the Lord, but if He is calling and confirming to me the need to make wiser choices in what I eat, it's an act of obedience for me to listen to that call.

Monday, August 9, 2010

and sign up for a free account, please. :) It's a great place to find wonderful prices on amazing programs and materials. We recently bought our Rosetta Stone at an 18% discount and earned "points" to redeem on other HSBC products on top of that!

I'm currently just 500 points shy of being able to receive Simply Music's Learn-at-Home DVD Program for Piano for FREE and can quickly earn those points if just five friends will sign up for accounts (as I get 100 points for each friend who registers through my link and you each get 100 points yourself just for registering). Any takers? Thanks so much! :D

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And while I'm "recruiting" I'll also tell you about eBates! It's a cash back program for doing online shopping from thousands of stores you probably already shop anyway. You can earn typically from 1-6% back on purchases, sometimes special offers will be made for 10% or more, or other flat incentives like $6 back on an Entertainment Book purchase. Stores include online merchants like eBay as well as more traditional places like Target, Barnes and Noble, WalMart, JCPenney, Dell and so much more. (With eBay I also earn eBay bucks, so I end up getting percentages back from every purchase through two different programs!) I joined eBates before Christmas '08 and do most of my gift shopping online. Without being aggressive about it (just trying to remember to start at their link before heading to a shopping website I was already heading to anyway), I've earned over $85 in cash rebates since I joined. Right now they are offering an incentive that if I can get 50 friends to sign up, I'll get a free Apple iPad or my choice of $500 bonus cash instead!

Saturday, August 7, 2010

4-year-old just stepped out of the shower, handed me his towel and asked, "Mom, can you get me un-wet?" This is the same child who will loudly inform you that he is "allergic of dogs" any time a canine comes within sight.
His swim trunks (I call it a swimming suit but his Daddy calls them "trunks") are "trunkers" according to our Little Bear. Just love this kid and his cute word choices.

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